Welcome to the NETs Group! Come say hi.

My husband has neuroendocrine pancreatic cancer stage four in liver as well. He's been having trouble with his sugar tanking. doc has him on 40mg steroids to control it. he also has stomach pain and he is on 15mg morhine 2x a day. He has trouble sleeping and can't stand how his face is swollen. treatment so far has been lanreotide injection, and he has had Y90 2x on liver tumors. When we first spoke to his oncologist she said this wasn't deadly. Now when we ask her any questions she just keeps saying well you have stage 4 cancer being vague when we ask if this is deadly. it has been just a little over a year since diagnosed. his endocrinologist sucks she hasn't said if there is a diet for him to control his sugar instead of having him take such high dose steroids. Is there ? thanks for listening just frustrated

Hi,
Even with the meds she says she isn't able to do the scan. She has has so many over the years that her anxiety is horrible.

We have talked about a few questions but I need to write them down. She has been though so much that she is thinking that she doesn't want to do anything. The decision is hers. It feels like we have been on a roller coaster with her health for the past seven years. We have been together for eight years. Three years ago she had major surgery to remove abcesses and mesh from her belly. She had fistulas also. When she came home from the hospital she had a wound the size of a volleyball that I had to pack. It did heal but over the past year she was having recurrent bowel blockages which is what lead to the last surgery. We are both tired. She is retired and I am still working and doing my best to care for her.

Thanks,
Penny

I also have stage 4 Neuroendocrine in the body pancreas along with small spots on my liver. I’m going on two years of chemo treatments. I have tolerated the treatments very well and alway looking to connect with people with the same cancer. I never know what to expect with this cancer and love to hear from others. Prayers for you husband. 🙏🏻

Hello @pennypowell and welcome to Mayo Connect and the NETs discussion group. I am sorry to hear about your wife's NET diagnosis. It always comes as a surprise. The DOTATATE scan is one of the best ways to track the NETs. Is it possible for her to have a med for relaxation prior to the scan?

Do you have a list of questions for the oncologist when you meet on Friday?

Hi,
My name is Penny. My wife, Cindy, had surgery on December 6 in which they removed two pieces of her small intestines. She was having repeated small bowel obstructions. She has had ulcerative colitis since she was 22 and she will be 62 on Thursday. At 52 they removed her entire colon and gave her an ileostomy. She still has UC in her rectum. This time they found a 3.5cm NET in one of the sections and in 2 of the 31 lymph nodes. Last week she did the chromogranin A test and her level is 421.2 ng/ml. She also takes pepcid and has since read that that and inflammatory bowel disease can cause increased levels. They want her to do a DOTATATE scan but due to ptsd she is not able to stay in the scan without having a panic attack. We have an appointment with a medical oncologist on Friday. Thanks for letting me join this group and I will pray for us all!

My wife was diagnosed with NET in April 2022, with mass on tail of pancreas, and too many tumors on the liver to count. Our team started her on chemo pills, along with Lanreotide monthly injections for the last 9 months. The NET has been reduced enough that cancer team is ready for surgery March 1st to remove mass and as many spots on liver as possible. The team believes that they can make it a maintenance issue only afterwards. How have you been able to tolerate the 2 years of chemo?

Hi everyone,
I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer in the Pancreas body along with small spots on my liver. I’m going on two years of chemo treatments. The cancer I have is rare and only consists in 1% of all pancreas cancers.
I have been of Chemo for almost two years and have tolerated the treatments very well. I’ve also had genetic testing done so I could provide with my family if this was hereditary so they could look out for this in their bodies. The good news was this wasn’t hereditary. I’ve been treated locally and have been to Dana Faber in Boston for a second opinion. Another good thing is my mail lesion on the Pancreas has shrunk about 60% fro the original size and the small spot on liver also decreased.
I’m always wondering if there is any other treatments that I can do along with the chemo to shrink the cancer. Feel free to charm in or contact me.
Praying for all cancer patients. 🙏🏻

It's overwhelming when you first get a medical diagnosis and feel bombarded with information. I've learned (over 5 years) to write down my questions before I go to help me stay on track.
And good for you for reaching out for support from people that have "been there, done that".